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Regular Member

Date Joined Apr 2006
Total Posts : 115
   Posted 7/18/2008 12:58 AM (GMT -6)   
Ok so I have recently cut down my cellcept and I am completly off prednisone, which I am happy about but I am freaking out. I am worried I am slipping again, I sleep til 11:30 to 12 and its freaking impossible to get out of bed before that. But its not like before when I would sleep all the time and after I got up I would I still would have no energy.Today my back started hurting where my kidneys are. I don't remember the last time I was really sick if my back hurt.  I don't know maybe I am just worried over nothing but I am worried that if there is something going my next doctors appointment is in aug sometime he said I could get in before hand if I needed it. Hopefully its just my nerves getting the best of me. Does anyone else have kidney involvment if so I could really use some advice on how you know if you are getting sick again.
Diagnosed on 4/17/06
LISINOPRIL (blood pressure)20MG, 
CELLCEPT (chemo)1000MG,
Zocor 10 mg

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 7/18/2008 8:50 AM (GMT -6)   
Well, I don't know about kidney issues, but I do know that when I try to cut my prednsione down past 7mg, I sleep till 11:30 or 12 like you mentioned. When on the pred, I sleep until about 9:30. So for me, the pred seems to make a big change in things.

Can you do a little experimenting on your own before you see the dr? Maybe talk to the dr office and get their guidance on what to try doing?

Hope things get better soon,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 7/18/2008 1:19 PM (GMT -6)   
jk, if you are worried about your kidneys I think it would be best to go in and get things checked out. Most people who have lupus kidney issues don't have pain in their kidney area, but they usually get really fatigued and feel rotten in general. I had some very mild kidney involvement at one time and had no pain, but felt very sick (lupus symptoms). The pain could mean something like a kidney infection though, so it's probably best to get to the doctor.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 7/18/2008 6:13 PM (GMT -6)   
jk, I kept complaining about the same thing and the docs kept telling me my urine was negative and my albumin and all fine, but you can go a while with a kidney infection before stuff like that is messed up. Also, don't rule out pelvic infection. I ended up having both and they were antibiotic resistent and needed a shot of rocephin, zithromax liquid and a course of flagyl. We often tend to be so used to pain that these infections get out of control, and while our urines might not culture sometimes, sometimes they are positive and the docs scan too fast to catch it, or rule out stuff that doesn't grow on cultures. I had white blood cells and whatever I had didn't culture, but lots of things don't culture. I'm still having pain in my right side, but after a year or two of complaining and probably having these infections, I imagine it might take a while. Be persistent. You know what kidney infections feel like, especially if you aren't producing enough urine, have foul swelling or dark or cloudy urine or not a strong enough stream or have pain or whatever. And even with a full hystero, like I had, you can still get nasty infections that are extremely painful. And I was sleeping in till one and two pm until I got it straightened out.

I wish you the best and hope you get swift and strong treatment.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

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